Open Access Hospice: America’s End of Life Challenge

Carolyn Cassin President & CEO

Continuum Hospice Care

Jacob Perlow Hospice

Live as if you were going to die tomorrow. Learn as if you were going to live forever.

- Mahatma Ghandi

Somebody should tell us right from the start of our lives that we are dying. Then we might live life to the limit every minute of every day. Whatever you want to do, do now. There are only so many tomorrows. –

Pope Paul VI

Patients with Life-Threatening Illness: Current Status

• 90% of Americans die after living with one or more life-threatening illnesses

• Most who die are elderly—median age of death >75 years—and population is aging

• Most die in institutions

EOL Care: Patient/Family Outcomes

• Results: • 67.1% of patients died in an institution

• Of 519 home deaths:• 198 (38.2%) did not receive nursing

services• 65 (12.5%) had home nursing services• 256 (49.3%) had home hospice services

Teno et al, JAMA, 2004

EOL Care: Patient/Family Outcomes

• About 1/4 described poor physician communication • About 1/4 with pain or breathlessness did not

receive adequate treatment• Insufficient emotional support reported by

• 1/3 of those cared for by a home health agency, nursing home, or hospital

• 1/5 of those receiving home hospice services Teno et al, JAMA, 2004

EOL Care: Patient/Family Outcomes

• Not “treated with respect”• nursing homes 31.8%• hospitals 20.4%• Home hospice 3.8%

• “Excellent” family satisfaction• Only 50% of those in institutions • 70.7% receiving hospice

Teno et al, JAMA, 2004

“Best Place to Die” Forbes Magazine 2004

• States ranked by weighted average of the following:• 2001 CMS data on overall quality of health care

• 2002 analysis from ABA Commission on Law and Aging evaluating overall quality of elder law

• Cancer deaths in hospitals, in LTC or at home

• Percentage of non-HMO Medicare patients receiving hospice care at end of life, 2000

• Calculation of after-tax assets for an estate valued at $10 million, 2004.

“Best Place to Die” Forbes Magazine 2004

Health Legal Cancer Deaths Hospice $10 milHealth Legal Cancer Deaths Hospice $10 milRank StateRank State care care protectionprotection H Hospital Nursing Homeospital Nursing Home care care estate_estate_

1 Utah 51 Utah 5 B- 20% 20% 63% 25%B- 20% 20% 63% 25% $5.9 $5.9

2 Oregon 112 Oregon 11 B+ 21 23 56 31B+ 21 23 56 31 5.9 5.9

3 Delaware 143 Delaware 14 A+ 29 21 52 24A+ 29 21 52 24 5.9 5.9

3030 New YorkNew York 24 B+ 52 20 28 24 B+ 52 20 28 16 5.1 16 5.1

4949 OhioOhio 38 C+ 38 C+ 30 31 36 30 31 36 27 27 5.1 5.1

5050 Illinois 46 A-Illinois 46 A- 41 24 37 41 24 37 25 25 5.1 5.1

End of Life Care in U.S.

Over 3,300 Hospice locations in the U.S. 1.8 Millions persons die of a clinical

terminal illness annually 37% Patients in the U.S died with Hospice $4 Billion in Hospice Expenditures - 2002 SUPPORT Study Dartmouth Atlas Data

End of Life Care in NYC

Nearly 47,000 New Yorkers died of a terminal illness in 2007

Only 17% of them had hospice care. 58% of those who did not have hospice died

in hospitals 98% of Americans describe their desire to

die at home, surrounded by friends and family as their preference for end of life care.

Response to the Status Quo: A National Problem

• Patient & Family want to be assured that: • comfort will be a priority,• values and decisions will be respected,• psychosocial and spiritual needs will be

addressed,• practical assistance will be available in the home,• help will be available to enhance coping with loss,

and • the likelihood of closure and growth will be

increased.”

Palliative Care

• Should be considered a best practice during routine medical care

• Should be available at a specialist-level for patients and families in need

Addressing Deficiencies in Palliative Care

• Improve “generalist-level” palliative care throughout the health care system• Education Continuing education• Systems change Quality improvement• Culture shift Community outreach

• Increase access to specialist-level palliative care• Hospice• Hospital-based palliative care programs• Other models

Hospice

• A federal entitlement for >20 years• Administered under Medicare Part A, with

equivalent benefit under Medicaid

• Similar benefits provided by most other insurers

• Nationally

• 4000 programs

• >1 million patients served

• $12 billion industry

The Hospice Program

• Not a place• A home care program with limited

access to inpatient beds • Highly regulated managed care system

with capitated reimbursements• A very robust set of services for

patients and families

The Hospice Program: What are the Services?

• Case management by an interdisciplinary team, including at least

• Physician• Nurse• Social worker• Pastoral care provider

• Access to volunteers• Access to home health aides• Access to other services (e.g., speech and swallowing)

The Hospice Program: What are the Services?

• Access to inpatient level of care for acute problems, family respite, or to care for the imminently dying patient

• Access to period of continuous nursing care at home

• Bereavement services for 13 months after the death at no cost

The Hospice Program : What are the Services?

• All tests and treatments At no• All drugs cost • Durable medical equipment if• Medical supplies related

to

terminal

diagnosis

Open Access

• A new model of hospice

• Goal is to mainstream hospice care into

current systems of care

• No limits to hospice eligibility except as

defined by law

• Certification of prognosis

• Informed consent and election of the benefit

Open Access Hospice: A New Model

• Hospice supports and pays for disease-

modifying therapies if they are

appropriate and do not change eligibility

• No need to “accept death” or

acknowledge dying

• No need to be DNR

Open Access Hospice: A New Model

• That allows American to come terms

with the ambivalence we have about

dying

The Benefits of Hospice: Not Fully Realized

• Late referral or no referral because• Discomfort about acknowledging advanced disease,

terminal illness, the reality of foreseeable death

• Lacking the facts: Uncertainty about the nature of the

Hospice as giving up

• Conflicting incentives abound in the American Health

Care System

• Hospices themselves

Hospice Myths

• “This patient is not Hospice appropriate…not close to dying” • Eligibility is a prognosis of “six months if

the disease runs its expected course”• Physicians usually overestimate prognosis• There are published guidelines and

hospice staff can provide direction

Hospice Myths

• “The family and patient aren’t ready to hear about hospice...”• Hospice is not about dying; it’s about

services

• Eligibility does not require “readiness to die”

• Patient or surrogate must acknowledge only that the disease is “terminal” and that the benefit can continue only if a physician certifies that the prognosis is limited

Hospice Myths

• “The patient must have a DNR to be eligible for Hospice”

• Not True!

• “The patient must have a 24 hour responsible caregiver”

• Not True!

Hospice Myths

• “There’s no point to hospice because the patient is imminently dying, already in coma…”

• The patient cannot benefit, but the family is eligible for 13 months of bereavement support at no cost

Hospice Myths

• “If I refer my patient to Hospice, I must give up providing care for my patient”• Not true!

• “The patient doesn’t want to give up his regular doctor” • The patient does not have to give up any

physician

Hospice Myths

“Hospice isn’t appropriate because…”

• “...the patient still wants ‘active’ treatment.’”• “…the patient doesn’t want just ‘palliative’

therapy.”• “…the patient won’t give up hope.”• “…we can still treat the disease.”

Hospice Myths

• With Open Access Hospice

• Hospice services are integrated with disease management

• Any treatment may be acceptable if it does not change hospice eligibility

A Vision for the Future

Humane, dignified and loving care for all patients at end of life

A peaceful ending to a life well lived

What Can You Do To Help?

Get involved in end of life care in your community

Champion Open Access Hospice

Quote

Do not seek death. Death will find you.

But seek the road which makes

death a fulfillment.- Dag Hammarskjöld